Incredible Irony

Every day I either laugh or cry. Most days, I do both. Watching my child suffer immense physical, emotional, and psychological abuse at the hands of the most well-meaning and caring of oncologists is often unbearable. I’ll never get out of my mind how one oncologist described the treatment needed to fight pediatric leukemia: BARBARIC.

Brett Austin from the NC State Wolfpack reppin his Hope for Harrison bracelet. These players and Coach Elliot Avent have rallied around this kid in a way I could never have imagined. Thanks, Wolfpack!

One of the most important drugs in his multi-drug chemotherapy is called asparaginase, which is derived from e coli. Nice! There are several forms of this drug, the most common being peg-sparaginase, or peg for short.

To illustrate how important this single drug is, before it’s use in frontline treatment, fewer than 80% of children with leukemia achieved remission during Induction. Since it’s discovery and employment that number has grown to 98%!

The drug is administered in most protocols several times. Harrison’s protocol (COG 0232) calls for the administration of peg on at least four, and up to seven, occasions. This single drug is irreplaceable in pediatric leukemia treatment.

To recall Harrison’s early journey, he was diagnosed on Friday, December 9 [a day that will live in infamy]. Surgeons installed his port on Saturday. On Sunday, he had an echo-cardiogram to get a baseline of his heart functions because the chemo does so much damage to children’s hearts. He started chemo that same day. Four days later he was given his first dose of peg.

The first concern with asparaginase is an allergic reaction, so they pre-treated with benadryl and monitored Harrison for four hours. Fortunately, he didn’t have a reaction. The next day, we went home.

Fast forward to the day after Christmas, and we were rushing to the ER with an unresponsive son. The ER doctor informed us that Harrison had had a stroke, had five bleeds deep in the brain, and probably wouldn’t survive. After he was transported to UNC from WakeMed the “rest of the story” began to become clear.

Dr. Stuart Gold, whose name accurately describes what kind of oncologist he is, was the attending on call that night. We had not met Dr. Gold before, but had heard wonderful stories about him. How we handled Harrison’s issues in the ICU that first night confirmed all we had heard. While he is not our primary physician, we have come to love and appreciate him greatly. If you get a chance, pray for God’s richest blessings for him.

Dr. Gold explained to us that the stroke was caused by two blood clots in major veins in Harrison’s brain. These clots were the result of the asparaginase. He said clots like these happened often, so they were not surprised. He also explained that ER docs are wonderful, but have little experience with pediatric cancer patients, and that the pediatricians in the ICU would want to treat Harrison differently than the oncologists, but that the oncologists would win in the end. Thankfully, they did [as an aside, I have found that our oncology team usually get their way. Not sure why, but I’m delighted they do].

Dr. Gold gave us hope for Harrison’s survival, even if there would be lasting brain damage.

We asked about the chemo Harrison was supposed to have the next morning. Dr. Gold explained that even a stroke doesn’t stop them during Induction; they just press on. You sometimes have to fight on multiple fronts, he explained. Whatever. Just get my kid through this, I remember thinking.

The next day Dr. Weston stopped by explain further what was happening. Long-story-somewhat-shorter, he said, “Yes, the peg caused this. No, we cannot tell which kids will develop clots and which ones will not. Yes, we will give him peg again.”

WHAT??

Dr. Weston explained how important the drug was. The risk-benefit made not giving it not an option. I sank in fear, not of the leukemia, but of the treatment.

Several months later now, Harrison has skipped two treatments of peg called for in his protocol. Why? His form of leukemia is resistant to asparaginase.

Dr. Weston and Dr. Mulligan (from St. Jude) have been tireless in their efforts to get to the bottom of Harrison’s heretofore unseen form of leukemia, and have discovered this resistance to the peg. Having determined his cancer cells don’t respond to the peg, Harrison no longer has that drug in his protocol.

What incredible irony: the drug that nearly killed him in an effort to save him was, in the end, of no use anyway.

So why didn’t the doctors know this in the beginning? Great question. There is a simple one-word answer: money.

It takes weeks to run a cancer patient’s DNA. The cytogenetic studies for a kid’s particular leukemia don’t come back until the Induction phase is nearly complete. And why does it take so long? Current methods of cytogenetic studies are too slow to accomplish the task any quicker. While other methods exist, they are simply too expensive at the moment to employ on a wide-scale basis.

Like so much of cancer treatment, more money is needed for pediatric cancer research.

For Harrison, the results of his testing which showed he did not need the peg came almost too late. Those results were a mere days after his nearly-fatal stroke. It is frightening to think that Harrison could very well have died just a few days before doctors discovered he never needed that drug to begin with.

How many children have died from blood clotting caused by peg? I don’t know the answer. But I do know that MANY kids develop these clots (something like 15% of leukemia patients). If oncologists could determine which kids respond to peg and which ones do not early enough, some of the children could be spared this dreadful side-effect. Dr. Weston mentioned how Harrison’s case would already save many kids’ lives, but that if only cytogenetics could be done more quickly more children could potentially be spared. I pray for the Hand of Providence to find new, affordable ways to do these studies and saves kids’ lives.

As you pray for Harrison, would you also pray for Gabe Pinon. Gabe is a sixth-grader at Harrison’s school who fought leukemia beginning at age two. He also developed a clot in the brain from peg and nearly died. His stroke required brain surgery that affects him to this day. Prayers for Gabe and his family would be greatly appreciated.

On the bracelet so many people wear as they “Hope for Harrison” is reference to a passage of Scripture:

Although I have seen Harrison few times since his diagnosis, I find him on my mind daily. My family and I are praying for your famliy multiple times each and every day. After I read your blog post, I remembered a verse. It’s a verse that I’ve used in situations where it seemed that my troubles continuously stacked up on eachother without end.

(James 1:2-3) “Consider it all joy, my brothers, when you are met with various trials, knowing as you do that this tested quality of your faith works out endurance.”

Thank you for sharing with us your tough experiences. We continue to pray for you!

Awe and fear, heartache and hope are what I feel everytime I read an update like this on Harrison and what is happening in the world of cancer treatment. I want to cry for you all and I want to praise God for His strength and blessings He so evidently bestows on each of you. My prayers continue. I only wish we were closer to visit, support and help with fundraising. It seems you are surrounded with wonderful friends and family to help.

I have a son who has been battling ALL since 1/20/10. In May of 2010 it was discovered that he had a 3cm by 1.5 cm blood clot attached to his port and extending through his tricuspid valve (very large clot for a two-year-old). His cardiologist told us that it was the biggest clot she had seen in a child without an underlying heart condition. We too were told it was due to the PEG. He was actually on COG protocol AALL0331, randomized to the arm with EXTRA PEG. No one could tell me that his clot wouldn’t break off and become a very large, possibly fatal, pulmonary embolism. We were told that he may need open heart surgery to remove the clot… in the middle of delayed intensification. His awesome team was able to remove the clot through a cardiac catheterization. It was by far the scariest time of my life. How did we go from fighting leukemia to possible open-heart surgery?!? When will people start to recognize that we can’t treat children with adult hand-me-downs? It is hurting ans killing them…